Monday, March 5, 2012

All the Little Voices Working Together - Welcome to the MS Public Policy Conference

At 44, Lee Domenico, mother of two from New Jersey, began
running after taking up walking every day during lunch. Her first run was 2.5
miles non-stop, and before she knew it, she was running 8 miles every day. Lee
Domenico adopted “I run to walk” as her mantra, ignoring the past seven years
of unexplained medical symptoms. She was feeling great!

Now, Lee runs a different race. Finally diagnosed with multiple
sclerosis in October 2010, Lee has devoted her life to raising awareness of MS
and helping others. There are at least 50 MS patients, five of whom live on
Lee’s street in her small, 12,000-member farming community of Hammonton, the
“blueberry capital of the world.” Lee has rallied her community to support MS Awareness
Week, asking local businesses and town hall to “light the town orange.” Walk
down Main Street this month and you will see orange lamps in the windows and Walk
MS paper sneakers for sale.

January 2011, Lee retired from her job as a secretary for the
State Superior Court of New Jersey after going on short-term disability in June
2010. Multiple sclerosis had made it impossible to continuing working. Lee was
approved for Social Security Disability Insurance (SSDI) in June 2011.

I was honored to talk with Lee Domenico as she prepares to
attend the 21st annual National MS Society Public Policy Conference in
Washington, D.C., March 5-7, 2012. Having won an essay competition, Lee was
selected to represent the Greater Delaware Chapter of the National MS Society at
the conference.

What are you most looking
forward to experiencing during the conference?

“I’m very excited [to be able to attend]. I don’t know what to
expect, but I’m looking forward to learning more about the different policies
and how we can work together as MSers to make a difference to get public
policies approved in our favor.”

Why did you decide to
become an MS advocate?

“I knew I had to do something, and here I was at home [after
retirement]. I had to find a way to contribute to society. Best thing I could
do for everyone was to be a voice for MS.”

In addition to openly talking about MS, Lee has sent letters to
the editors of the local papers in her community, and one newspaper recently
featured Lee and her advocacy efforts.

Lee will be contributing her voice on Wednesday as she visits
her elected officials on Capitol Hill to discuss the important issues affecting
MS patients nation-wide and to ask for lawmakers’ support in allocating vital
resources.

Like many newly-diagnosed patients, Lee signed up for Walk MS to
raise money for the National MS Society with a team fundraising goal of $2000.
Lee recruited a team of 56 walkers - the Lee’s MSketeers - who raised $10,000
for the 2011 Walk MS.

What did you do with that
motivation after Walk MS?

“I started my own foundation, the Lee’s MSketeers Foundation. We
will work with the local chapter to help people who fall through the cracks and
who need financial assistance. Right now, we are waiting to receive our
501(c)(3) non-profit status.”

The Greater Delaware Chapter will screen needy patients, and
those whom the Society are unable to help will be referred to Lee’s foundation.
Grants will be limited to $500 per patient year.

“I am motivated and passionate. The path I now follow is to
raise awareness of MS and to educate the public of the disease. Yes, we do look
good but darn it, I wish others could see our insides and how we struggle each
day to function.”

What words do you have to
share for those who might think that their voice doesn’t matter?

“One person can make a difference. One little voice, all the
little voices, if all the little voices joined together, think of how powerful
we become.”

Lee sees herself as more a team player than a leader. However, I
believe Lee is blazing a unique path in supporting MS patients in her
community. This may not be the road she planned to travel in life, but it is
one which has spurred her creativity and passion. She is truly an
inspiration.

As the 21st annual public policy conference gets underway this
afternoon, follow @MSActivist onTwitter.
Use the hashtag #MSactivist to join the conversation.

Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.

2 comments:

Where to begin ? Married to my smoking hot wife 27 years and just found out what was wrong with me Nov 2011. I've always been active and pretty fit. I thought that I was just getting old and lazy because I had trouble walking for miles and was always tired... Anyway .. instead of feeling sorry for me ... my loving wife just told me that she was going to start learning how to run a 5k race .. (what !?) my wife has never run before.. what was that about ? As I found out later.. what she was saying to me was.. "get your butt off the couch and stop feeling sorry for yourself".. So I eventually got up an started training with her.. I can't run or walk very far, but I could still ride a bike. Tomorrow, she has to train for 11 miles, and I will be right with her on my bike... The weird part about all this is.. I just had my 1st annual MRI. After taking those terrible shots for a year, changing my diet and doing some excercise when I am able, the Dr. announced that my legions had shranked from last year.. now I know that this is not a cure, but it was encouraging and I credit my beautiful wife for her support !!! Keep moving ya'll !!

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About the Society

The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.

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